Death concerns and psychological well-being in mothers of children with autism spectrum disorder

• We examined the psychological well-being of mothers of children with autism spectrum disorder (ASD) and mothers of typically developing children.
• Mothers of children with ASD reported a greater accessibility of death related thought compared to mothers of typically developing children.
• Additionally, mothers of ASD children reported higher feelings of negative affect, depression, and anxiety.
• Greater death-thought accessibility, in turn, mediated the influence of ASD diagnosis on negative affect, depression, and anxiety scores.

PurposeUtilizing a terror management theory perspective, the present research examined whether having a child with autism spectrum disorder (ASD) is associated with underlying cognitions and explicit worries about death, and their roles in psychological well-being.Method147 mothers of children with ASD (n = 74) and typically developing children (n = 73) completed a fear of death scale, as well as measures of death-thought accessibility, positive and negative affect, depression, and anxiety.ResultsFollowing previous research, mothers of children with ASD reported worse psychological health. Additionally, they evidenced greater death-thought accessibility compared to mothers of typically developing children, but did not differ in explicit worries about mortality. Greater death-thought accessibility, in turn, mediated the influence of ASD diagnosis on negative affect, depression, and anxiety.ConclusionThe current study offers an initial understanding of the association between mortality concerns and psychological health for mothers of children with ASD. Further, it underscores the importance of health care providers’ efforts to attend to, and educate parents about, their thoughts of mortality, even if the parent does not acknowledge such concerns.What this paper addsThe present study examined the impact of both implicit and explicit worries about death in parents of children with Autism Spectrum Disorder (ASD). Specifically, we were able to demonstrate that increased death-thought accessibility among mothers of children with ASD was associated with worse psychological health. While it is possible for parents of children with ASD to report conscious worries about death, there were no observed differences on this measure. As far as we know, this work is the first to empirically examine the prevalence of mortality-related concerns in this population and the subsequent effects of death-thought accessibility on psychological health. This is an important avenue of research as parents of children with ASD may experience greater worries about leaving their children upon death with no one to care for them, or to leave their children in the care of individuals who may not understand their son or daughter's unique needs. Additionally, the current findings highlight the importance of addressing mortality-related concerns, even when they may not be explicitly recognized, among parents of children with ASD. Given the effectiveness of parent education programs for children with ASD, a primary avenue for intervention may be education. Training care providers in ways to better discuss thoughts of death may help to alleviate stress and foster greater psychological well-being.